Friday, August 28, 2009

A week of Firsts....

Jacob and Brie started back to school. We all went and had breakfast together and talked (I cried) about how exciting it is to start a new year of school.

Both of them are now at Elizabeth Cobb Middle School. Brie is a 6th grader and Jacob moved up to 7th. On the 1st day Brie was really nervous, starting a new school and the Math and Science Magnet program. Jacob was glad not to be at the bottom of the food chain any longer.

The 1st day could of gone by without a hitch, but why would it? Jacob and I both ended up mad by 10:30 am. Jac got pulled from 1st period over a vaccination. This year it was required that all 7th graders have their Tdap vaccination (whooping cough, tetanus, and diphtheria). Jacob only had the tetanus part of the required shot because the whooping cough part of the vaccine is known to cause seizures. Since Jacob has a history of seizures and NF2 can be considered a seizure disorder our primary didn't want to give it to him. I discussed this with the nurse at Cobb this past May and was told everything was taken care needless to say I was very upset that Jacob was pulled out of class, sent to the library like he had the plague, and I was called to "pick up my son." I spoke to the teachers in the media center, a person in the office and the nurse. By the time I got Gavin back out of bed and walked through the doors of Cobb, Jacob had been given his schedule and sent to class. I was assured everything was fine. It took me a while to cool down from that - like Jacob doesn't go through enough! Little things add up!

Anyway, after school on Monday I was so glad to hear they both like all of their teachers and seem happy with their classes.

It has been really nice to have them both at the same school only a mile down the road!! Gavin and I even walked to meet them when school was over Monday and Tuesday. A 2 mile walk in the afternoon feels great. Can't wait for the fall breeze.

Wish all I had to worry about was a vaccination and the weather. School has been really hard for Jacob adjusting to school with his vision loss.

I spoke with the vision teacher at Cobb on Tuesday and they are working on Jacob getting set up in the vision program. They were waiting on paper work from Shands. Being in the vision program will offer Jac large print books, talking books, and teach Braille. I will learn next week what other things they can offer to help Jacob. Like with his notes and worksheets and such. This week was hard for him regarding doing, reading, and writing his school work. The print in the books are too small, his worksheets print and numbers are too small and he has a hard time seeing the things he has written himself. TD reprinted a lot of Jacob's home work in font 28 to help him see it, so he could do some of it on his own. Brie, TD and I took turns reading him questions and helping him fill out papers. I guess we are going to have to go to key locks instead of combinations - those numbers are too small for him to see too. It's been rough for him.

I am waiting still on Division of Blind Services to finish his application and get him help through them.

Then there was Thursday...

It was another lovely day at Shands.

First let me say that I received an email from Dr. Amy Smith (a response from an email I sent her last Friday) really late last night. She stated in her email that her and Dr. Pincus are not convinced that what is showing up on or around the optic nerve is a tumor, based on the MRI from August 17th. Dr. Harbour is the one who stated it was a meningioma or a glioma. I sent the email to Dr. Smith asking why he didn't know for sure. Dr. Smith's email said she would like for Jacob to do a CT scan to get a better look at his optic nerve and the surrounding areas. It could be a tumor or another possibility is spinal fluid collection from something else. She wants to discuss Jacob having a spinal tap to check his spinal pressure. (I recently read about this on the NF2 Crew - elevated pressure in the spinal fluid can cause the optic nerve to swell causing problems with vision). I don't know how safe the spinal tap is with NF2- I haven't spoken to Dr. Smith yet.

So we got up and went on to Gainesville to met the radiation/radiotherapy doctor.

At 9:45 we met with Dr. Amdur at the Cancer Center and his 2 residents/fellows.

He said if it is a tumor then they can do radiation, but he isn't sure he would recommend it at this time. There are a lot of risks. (Better to wait)

He went over radiation options in the event that the CT does reveal a tumor.

The type of radiation they would do is photon RT. Shands Jacksonville (1 in 5 places in US) offers proton RT, which is the same radiation delivered by a different machine. Jacob could do either.

He discussed the risks.

  • 50/50 that patients pituitary/hypothalamus get "screwed up" and will need some form of meds to help hormone imbalance.

  • 1/4 that sight is improved at all

  • 1/4 usually report no additional loss of sight

  • 1/100 that patient will suffer memory issues (short term memory, thinking skills, etc)

  • 1/1000 that radiation will cause complete blindness (Dr. Couldn't recall any)

  • 1/100 that tumor will grow back years later or a new tumor will grow (cause new tumor growth)

  • typical radiation treatments for this type is 2x a day for 5 weeks
Dr. Amdur called Dr. Smith before we left to see if she wanted to see us. She sent us to have a CT. After 2 hours of the CT staff trying to figure out the orders from Pincus and Smith, Jac got his IV in and had his 45 second CT scan.

Now we wait again for those findings.

On the bright side.....

I am very excited to say Jacob has been accepted into the NF2 study at NIH.
I received an email from the Neurosurgeon Dr. Asthagiri's Nurse Practitioner. She stated that they had received a letter from Dr. Amy Smith and Jacob's films and they were reviewed on August 20th. She said since that time, their offices had been moving and she has not had a chance to respond to me. However, she said Dr. Asthagiri is interested in seeing Jacob in the NF2 study. They are booking in Oct and Nov. They plan on Jacob getting an MRI scan, seeing the eye doctor and ENT doctor as well as doing audiology and vestibular testing, blood work and seeing the pediatric oncologist. She said the MRI scans are the hardest to book and depending on the availability it could take several weeks. She still needs to register Jacob so I hope to hear from her soon.

I am holding onto hope that this group of doctors at the NIH who take care of many NF2 patients will have more answers and be able to help Jacob.

So Jacob and Brie weren't the only ones who were busy this week. Gavin started eating cereal this past Sunday and he loves it!! By Wednesday night he was opening his mouth when he sees the spoon coming and he is learning to keep his hands out of the way. It is really cute and less messy than I remember, but I bet there is plenty of mess to come. Gavin also cut his 1st tooth. Ouch. This little bottom tooth is so sharp and is making him drool and chew on a little boxer. :) There are only a mouthful more to come. Bring em on - we're ready.

Glad it's Friday. We are ready for the weekend. Jacob and Brie are excited they are going to their favorite cousin's house and I am thrilled to have TD home with me a few days that don't include doctors appointments.

Our week of Brie's 1st day of middle school, Jacob's 1st day of 7th grade, Jacob's 1st trip to the radiation therapy doctor, G's first taste of cereal and G's 1st tooth is winding down.

What's next???

Saturday, August 22, 2009

I love my Family!!!

08-17-09 MRI and Results

On Monday August 17th we drove from St. Pete to Gainesville for Jacob's MRI of the brain and eye orbit. This was the first MRI Jacob has ever had without anesthesia. It was at a different place than we usually go. It was at UF Radiology in the Medical Plaza instead of the UF Shands Hospital. I was worried because Jacob's MRIs are usually long and exhausting for all of us.

Where was our EASY button? Holy smokes something went the way it was supposed to go. We got there early and were taken right back. TD stayed in the back with Jacob for support. I was given the task of entertaining Maks and Brie, taking care of Gavin and walking Grissom and Connor (Maks and Brie were a big help). The scan only lasted 15 minutes longer than they said it would....45 mins instead of 30 and they got Jacob's IV in on the 1st try! Jacob said the contrast didn't hurt either. Which was really nice. For those of us who have had a CT before know how bad the contrast burns. Jacob said it was really hard to be still with his eyes closed for the scan, but the nurse said they got great pictures and that Jacob sat more still than most adults do. The only issue Jacob had was with the headphones. He said it was cool to have music to listen to, but they were too tight and started to hurt. They had to stop the scan for him to take them off. Jacob said the machine was really loud too. Not a big deal. With all this said it was definitely the easiest MRI Jacob has ever had...thank goodness. Jacob's dad and GG came too to support Jacob and be there for him also.

The MRI may have been easy, but the results have not been easy to swallow. The scan showed that Jacob does have a tumor/growth on his optic nerve in his left eye - his only eye. Dr. Robert Harbour called Friday morning and informed me that Jacob has either a meningioma or a glioma on his left optic nerve. It is more likely a meningioma, but he isn't sure. And why not I ask?? It was a rushed conversation and I was left, as always with more questions.

Meningiomas are common in NF2. Jacob has some in the brain already. This type of tumor is slow growing and usually are not malignant. Dr. Habrour said if it is a meningioma it has most likely been there since birth and just now gotten big enough to cause problems. We really didn't talk that much about what a glioma is, but it is the "worse" of the two types of tumors and grows very fast. He really feels like it is a meningioma.

Dr. Harbour recommended Jacob be seen by Radiation Therapy at the Cancer Center at UF Shands - a Dr. Robert Amdur. Jacob has an appointment this Thursday, August 27th. He isn't sure if radiation is an option, but surgery is not at this time. We will know more after Thursday.

Please, Please, Please keep Jacob in your prayers. Please pray for God to speak to me, to us and help us make the right decisions for Jacob's care. This is Jacob's only eye, his only way to see the world. We need to make the right choices for Jacob's future!

Wednesday, August 19, 2009

Jacob's Birthday Week '09

It's hard to believe Jacob turned 13 this past week. Where has the time gone? It seems like yesterday that he was as tiny as Gavin. Now he is a teenager and gearing up for 7th grade.

Jacob's birthday week was a lot of fun...for all of us.

Last Monday Jacob and Brie piled in the truck with Granma Gina, Erin and Darbi and headed to St. Pete. On Tuesday, for Erin's 15th birthday, they hit the road again and went to Aunt Rachel's in Orlando. After dinner at the Bob Marley restaurant (Erin loves Bob Marley), they were off to the Fun Spot where they drove go-carts and played games. Wednesday morning, for Jacob's big 13, Rachel took everyone to Islands of Adventure. Jacob said the Hulk was much faster than he remembered from last time. They all said the park was awesome, but hot. God bless you Gina and Rachel for taking the kids!! They ate dinner at the Nascar Cafe on City Walk. Jacob said he felt right at home.

TD, Maks, Gavin and I left Tally around 1:00pm and made our trip south to St. Pete (we had Grissom and Connor, too). Gavin was so good on the ride down, sleeping most of the trip. We only stopped once so he could eat and stretch. When we got to St. Pete we had Italian for dinner with TD's dad and took a walk around "Coffee Pot" by the Vinoy Park. Maks was excited about the Sheephead fish and the Manatee we saw during our walk along the bay. It was a nice night.

The gang got home from Orlando around 10:00 pm. Jacob opened presents and we all talked about the past 3 days. Rachel and Mr. Dana opened presents too - their birthday were the 2nd and 13th.

Thursday morning we packed up and got ready to go camping at Ft. Desoto. Gavin and I visited Aunt Julie for the first time and he really enjoyed himself. Julie has a family home child care so there was lots of fun things for Gavin to do at her house. Grissom and Connor went for grooming/haircuts and came home so clean and cute on Thursday afternoon. We love Furry Friends in St. Pete. Thursday evening we had a nice cookout at the camp. One of my dearest and oldest friends, Jennifer, and her two girls, drove up from Sarasota to eat with us. It was really special to see them after all these years. Granma Gina, Renee and Aunt Rachel brought Sonny's coleslaw, baked beans and macaroni salad to go with the burgers, dogs and chicken. Dinner was yummy. The kids played at the playground and Jacob and Maks ran around popping off their cap guns. I slept so good Thursday night in the cold camper! It was so much better than our past tent camping. Gavin enjoyed his first night at the campground.

Friday morning we went to the Ft. Desoto Pier to meet Heather, Josh and Presley. Presley is such a sweet baby girl and cute as can be (8 days younger than Gavin)! TD was so happy to finally get to meet her. Grandma Poucher, Curt and Polk came to see us as well. It was kind of rainy. We went down to the water for a bit... TD taught Jacob how to throw his new cast net and Brie ran back and forth from the pier to the water feeding this old seagull/tern some baitfish the boys were trapping in their nets. She swore the bird couldn't fly. It was really cute. We all went back to the camper and Gavin and Presley got to play with each other. They stared at one another, blew bubbles, and cried together. Gavin got Presley going. She is so sweet - she never cries. Gavin was so cute sticking his tongue out at Presely.

Around 2:00 pm it was time to get ready to go to the Trop for the Rays baseball game!! We were so excited. Gavin's 1st BB game!! 1st Rays game! Rays game for Jacob and Maks!!
Joe, TD's good friend from childhood, met us at gate 4 around 4:00 pm. We entered through the home plate club, box and season ticket holders gate. (TD's friend works for the Rays club house) Joe took us right down to the field! We stood on the players batter box and watched the Rays take batting, pitching and fielding practice. The players all look so much bigger in person. It was awesome. Jacob, Brie and Maks got their baseballs signed by Evan Longoria and David Price and by Kevin Millar from the Blue Jays. I missed them because I was changing a poopy diaper...but that is my luck. Standing waiting for 2 hours and miss the two coolest players because I'm changing a diaper. That's ok, TD had Gavin's baseball signed! Joe came out and took Jacob by himself into the club house. He got to see the players lounge, where the players have their lockers, where they work out, Maddon's office, the tennis ball batting cage, the storage room (where Joe let Jacob pick a hat) and the sewing room. Jacob said Aybar was taking batting practice in the tennis cage at 170 MPH! Crazy, right? Jacob was so excited and happy. He said it was his best birthday present ever. Joe also gave us the best seats - right behind home plate, about 20 rows up and he hooked the kids up with t-shirts and bobble heads. Thank you so much, Joe!! That night Mr. and Mrs. Yodis had Happy Birthday Jacob put up on the big titron board. (Thank you Mr. and Mrs. Yodis)It was a really exciting night for Jacob, he felt really special. We visited the Rays tank to feed and touch the sting rays and shopped in the big store. Gavin, Maks, Brie, Pops, TD and I had a great night too!! Wish the Rays would of won, but we did take the series 2 out of 3.

Saturday morning the boys went fishing out in the boat with Nick and Josh.

Brie and I headed to the beach. Brie and I got the baby tent up, sat in the water, watched a family/pod of dolphins and dug for seashells. 30 mins later, Brie and I took the tent down, packed up and headed back to the camper. Gavin loved sitting in the water, but wanted nothing to do with the tent and his bouncey. It was too hot for me to sit under the tent holding him. So my morning at the beach that I had been longing for was cut really short by a very unhappy little one. Someone needs to invent SPF for under 6 months. Of course Gavin fell right asleep when we put him in his car seat and headed back to the camper! Little stinker. I called Gina to come get us and we had lunch and did some shopping. Later, Gina and Brie sewed. Gavin and I were waititng to see Daddy and the boys and to go to Grandma Poucher's for G to meet Cousin Britni, Nick, and Ashley for the first time.

The boys had a great time fishing. Maks and Jacob loved watching Josh throw the big cast net for bait. They caught a mangrove snapper, trout and a mackrel. Josh hooked up to the biggest barracuda that the boys have ever seen and it torpedoed out of the water nearly 6 feet! It broke the line on the rocks under the Skyway bridge, but the boys haven't stopped talking about it. They caught the usual catfish and ladyfish too! They said it only rained a little bit and even though they didn't catch a shark, none of them came home with a skirt! :)

Birthday dinner at Grandma and Grandpa Poucher's was wonderful as usual. I love it. I love seeing and visiting everyone. Nothing beats family and food. Uncle Randy even came by in the fire truck! Gavin and Presley played some more and the babies got lots of sugar from all the fam. Jacob, Erin and Mr. Dana (Pops) opened presents and we (I) ate chocolate cake, vanilla cake and lemon meringue pie and I am happy to say, no, Gavin did not have a tummy ache later, lol.

Sunday we decided not to go home. It just didn't make sense to drive back to Tallahassee Sunday afternoon and then get back in the car Monday to go to Gainesville for Jacob's MRI.

Sunday we packed the camper and Brie went shopping with Darbi and Erin. Aunt Julie and Uncle Randy came and got the camper. Thank you so much for letting us use it - it was so nice having our own potty, shower, kitchen, AC and beds. I never knew what I was missing tent camping all these years. I understand why Becky and Todd love theirs!!

TD, Maks, Jacob, Gavin and I went and had lunch at PJ's on St. Pete Beach. It was delicious as always. Grouper and Gator Bites!! TD and I went back to Julie's to clean the camper and the boys walked to the park to play wall ball. Later we went to the Vinoy Park. We had a nice walk and the boys threw their cast nets. I enjoyed wading out into the water. I learned how to throw the cast net. Jacob was a good teacher. I didn't get any fish though. Jacob and Maks caught several bait fish and a few purple and yellow stripped fish. Gavin sat on the park bench with Granma Gina and Daddy. That night we had a mini Thanksgiving for dinner. Gina cooked turkey, potatoes, green beans, sweet potatoes and rolls. My belly was in heaven. After dinner I visited with BJ and Tim and the boys swam with the girls. Needless to say I slept like a rock Sunday night!!

Monday morning - it was time to head to Gainesville to University of Florida Shands for Jacob's MRI. We visited Grandma and Grandpa Poucher, Julie, Heather, Josh, Presley, Pops and Granma Gina. It was hard saying good bye and hard to go home after such a wonderful trip, but it was time.
Thank you to everyone who made Jacob's birthday week so special. I love you all so much and I feel so lucky to be part of such a wonderful family and have such great friends.

Monday, August 10, 2009

Gavin's 4 month appointment

Gavin had his 4 month appointment today.

He weighs 15 lbs 10 oz and is 25 and 3/4 inches tall.

He survived 2 vaccinations and will spend the next 2 months catching up from the ones he didn't get today. (we are spacing vaccinations) So far this evening G doesn't seem to be feeling bad from them. Thank goodness!

Gavin has met all of his developmental milestones for a 4 month old, plus some. He is holding his head very steady and on his tummy can lift his head 90 degrees. He also raises his chest up on his arms when on his tummy. G is rolling from his back to his front from his left side and keeps his head in line when being pulled to a sitting position. He is smiling all the time, squealing when he is happy, making razz sounds and using the aah-goo sound. He is reaching for objects and trying to get them in his mouth. G's sight has definitely come in and sees everything now. He loves standing while being held and really enjoys listening to stories.

I am so in love with Gavin's extrovert and exciting personality, his many expressions and the joy that he brings into our home.

I am so blessed with another beautiful child and I am so thankful that he is healthy.

Sunday, August 9, 2009

Jacob's Eye appt at Shands

Friday, August 7th was another long appointment at Shands. We had an appointment with a new doctor. A neuro-opthamologist- Dr. Robert Habour. He is out of Pensacola, but travels to Shands in Gainesville twice a month.

After 5 hours and several tests, pictures, and meeting with other doctors and techs we finally met Dr. Habour. After all of theses things we still aren't sure what is going on with Jacob's vision. It seems to be something is wrong with his optic nerve. They did testing that showed Jacob does not have nearsightedness or farsightedness and that stronger glasses won't help him see better. They checked the pressure in the eye and dilated the eye to look for any visual tumors or abnormalities. Pressure was normal and they didn't see anything on Jacob's retina. One of the doctors also said that the light reflected from the back of the eye and this was good. As we already knew Jacob suffers from a drusen, but the doctors informed me that it is so mild it shouldn't be causing any problems at this time. The Goldman's fielding testing results were that Jacob only has peripheral vision and no head on vision. They also took photos of Jacob's eye. The pictures reveled that Jacob's optic nerve has atrophy (weakening) and is yellow-pale in color instead of pink. This is of huge concern to Dr. Harbour. This is a huge concern to us. This is Jacob's good eye, his only eye. This eye had 20/30 vision in it only 7 months ago. Dr. Harbour said Jacob needs to have another MRI as soon as possible. Evidently the MRI they did last month doesn't have everything they need. We even tried to get him in Friday night, but weren't able to, so we will be making another trip to Shands very soon.
This is so upsetting, but I won't write about the sadness that I am feeling right now, but keep faith that God will lead Jacob and me and our family through this time.
His MRI will most likely be August 17th. They wanted him to do it sooner, but Dr. Habour said we could wait a week, but not any longer.
Jacob is going on his last summer trip this week for his 13th birthday. Off to Orlando- Universal Studios and Islands of Adventures with his Granma and Aunt Rachel - We will be meeting him in St. Pete on Wednesday for fishing, a Rays game and a birthday party with the Poucher's. Maks, Brie, Erin and Darbi will be with us as well. We are going to forget about our struggles this week and enjoy our time watching and enjoying Jacob being Jacob.

Wednesday, August 5, 2009

Call Back from Dr. Pincus' office

Finally Dr. Pincus' office called today and said that Dr. Pincus spoke to 2 other doctors at Shands and they all agree that Jacob should do another MRI in October and go from there. The MRI is scheduled for October 21st. I was a little upset by this phone call because I left 2 messages over the last week for Leeanne, Dr. Pincus' nurse and she hasn't returned my calls. I have more questions! I sent Dr. Pincus 2 emails - one requesting info on a trial drug called Avastin that several NF2 patients are having success with taking and the 2nd about a doctor in Washington D.C who only sees patients with NF2. Instead of one of them responding to me - they had a receptionist call and relay the above message to me with info that we already knew. (I also am bugging the oncologist, Dr. Smith's office).

So I have contacted NIH in Washington, DC myself and started the ball rolling to get Jacob enrolled in their 5 year NF2 study. (Thank you for your help Laura!) Their care for NF2 patients is supposed to be outstanding.

I am also waiting to hear from one of my mom's friends who happens to know a woman who has NF2 and is on a trial drug and is having success. This friend also had spinal surgery with good results.

Remaining hopeful!

Then there is Jacob's appt Friday...that we were supposed to have on July 17th, until they bumped us. Ugh. Hope Jacob's MRI from July 7th will show them what they need.